New Pain

[Guest guest]

Hi, have you found any connection betwen this new pain and food you

have eaten? One of my AIH symptoms was excruciating colicky pains on

my right side, worse than labour pains and lasting for hours. And as

with you, nothing could be found. I was recommended a diet change as

it could be that the little ducts that carry bile in the liver are

affected. Cutting down on meat and fatty food, eggs -all rich stuff

realy, has helped a lot. In fact it must be the right thing to do

because whenever I do eat rich food (fat cheese, meat, creamy sauces,

ice cream, you name it...) I pay for it with agony.

Good luck!

>

> Hi All

> so i'm very familiar (we all are) with the right upper quadrant

pain that's

> a bit of a given it seems with AIH,but the last few months i've

been getting

> excruciating pain right in the middle of my upper quadrant,it's

like being

> stabbed.

> we've done ultrasounds,doing more,the drs can't figure it out,it's

become a

> in joke between my drs and i that they ca never quite figure out

any of my

> ilnesses,have to laugh,otheriwse i'd just keep crying.

> my bloods re: all things liver seem great,they think it might be a

whole

> other thing,i don't want it to be!!

> liver playing up,been there,done that,coped.i don't want any more

ilnesses

> than i already have thank you very much.i'm weary of it.

> anyway,i digress,does anyone else get this type of pain??

> i'd be really interested to hear.

> blessings to all

> A.

> Amber Leonard

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

[Guest guest]

Amber,

I'm new to the group, but also very familiar with this type of pain.

I was diagnosed with Autoimmune Cholangitis, non-AMA positive PBC,

but none of my doctors could explain why I would get these pains in

the middle of the night, after eating and periodically during the

day. When I decided to go to Mayo Clinic for answers, they finally

discovered another autoimmune disease that I have called Celiac

Disease. This disease is an intolerance to glutens, such as wheat,

rye barley and possibly oats, which destroys the lining of the small

intestine. In my case, the lining of my intestine was dimished

enough that it caused bile to back up into my stomach causing some

of the pain I was experiecing. After researching the disease, I

found out that about 95% of the foods we buy at the grocery store

have some form of glutens in them. The obvious are breads, cereals,

baking ingredients, but the hidden glutens are used as thickening

agents in condiments, processed meats, ice cream, potato chips, etc.

I too was told to cut the fat out of my diet before going to Mayo,

but finally discovered the truth. Since going on a gluten-free diet

the pains have diminished and I am able to face life without getting

in a hot bath 3 times a day to mask the pain.

It might be worth checking out. I know you said you don't want

anymore illnesses, but this would be one you could be in control of,

instead of drugs and doctors.

Ann Mather

>

> Hi All

> so i'm very familiar (we all are) with the right upper quadrant

pain that's

> a bit of a given it seems with AIH,but the last few months i've

been getting

> excruciating pain right in the middle of my upper quadrant,it's

like being

> stabbed.

> we've done ultrasounds,doing more,the drs can't figure it out,it's

become a

> in joke between my drs and i that they ca never quite figure out

any of my

> ilnesses,have to laugh,otheriwse i'd just keep crying.

> my bloods re: all things liver seem great,they think it might be a

whole

> other thing,i don't want it to be!!

> liver playing up,been there,done that,coped.i don't want any more

ilnesses

> than i already have thank you very much.i'm weary of it.

> anyway,i digress,does anyone else get this type of pain??

> i'd be really interested to hear.

> blessings to all

> A.

> Amber Leonard

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

[Guest guest]

Ann it is good to know there is another one out there with Celiac. I was dx with Celiac October of 99. I suspect I have had it all my life, but it was just now diagnoses. I also have the skin counterpart called Dermatitis Herpitiformis. This was dx 24 years ago. At that time, I was told to go on a gluten free diet, but I discovered the meds could help out, so I didn't go on it "religiously."

Now, however, since I am on a rigid gluten free diet, I am sooo much better! I no longer take the meds. However, the liver problems are difficult to discern between what is gluten contamination and liver pain.

I am the only patient my doctor who has these two diseases...they both are odd diseases and both are rarely seen together.

I hope you have success like I have had success with my gluten free diet.

Debby

[ ] Re: new pain

Amber,I'm new to the group, but also very familiar with this type of pain. I was diagnosed with Autoimmune Cholangitis, non-AMA positive PBC, but none of my doctors could explain why I would get these pains in the middle of the night, after eating and periodically during the day. When I decided to go to Mayo Clinic for answers, they finally discovered another autoimmune disease that I have called Celiac Disease. This disease is an intolerance to glutens, such as wheat, rye barley and possibly oats, which destroys the lining of the small intestine. In my case, the lining of my intestine was dimished enough that it caused bile to back up into my stomach causing some of the pain I was experiecing. After researching the disease, I found out that about 95% of the foods we buy at the grocery store have some form of glutens in them. The obvious are breads, cereals, baking ingredients, but the hidden glutens are used as thickening agents in condiments, processed meats, ice cream, potato chips, etc. I too was told to cut the fat out of my diet before going to Mayo, but finally discovered the truth. Since going on a gluten-free diet the pains have diminished and I am able to face life without getting in a hot bath 3 times a day to mask the pain. It might be worth checking out. I know you said you don't want anymore illnesses, but this would be one you could be in control of, instead of drugs and doctors. Ann Mather> > Hi All> so i'm very familiar (we all are) with the right upper quadrant pain that's > a bit of a given it seems with AIH,but the last few months i've been getting > excruciating pain right in the middle of my upper quadrant,it's like being > stabbed.> we've done ultrasounds,doing more,the drs can't figure it out,it's become a > in joke between my drs and i that they ca never quite figure out any of my > ilnesses,have to laugh,otheriwse i'd just keep crying.> my bloods re: all things liver seem great,they think it might be a whole > other thing,i don't want it to be!!> liver playing up,been there,done that,coped.i don't want any more ilnesses > than i already have thank you very much.i'm weary of it.> anyway,i digress,does anyone else get this type of pain??> i'd be really interested to hear.> blessings to all> A.> Amber Leonard> > _________________________________________________________________> Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hello everyone...Last night I started hurting in the right collar bone area

and it is still here today...it hurts badly everytime I move. I've never heard

of PA affecting this area before so I'm wondering if any of you out there have

experienced this pain too. Thanks, Cyndi

[Editor's Note: Cyndi, I'm sorry to report that involvement in that area is not

really that rare. It is listed as one of the hallmark involvement areas in PA in

a number of reference works I've reviewed over the years; and--darn it--I can

attest to it from personal experience as well.

D.]

[Guest guest]

In a message dated 11/12/2003 11:23:30 PM Central Standard Time,

cynjan@... writes:

> [Editor's Note: Cyndi, I'm sorry to report that involvement in that area is

> not really that rare. It is listed as one of the hallmark involvement areas

> in PA in a number of reference works I've reviewed over the years; and--darn

> it--I can attest to it from personal experience as well.

> D.]

>

Well...not what I wanted to hear, , but I DO appreciate the info!

~Cyndi

Editor's Note: Cyndi, would I be right in guessing, that when a new

area/joint/location is " heard from, " you go through a little period of analysis,

or a kind of checklist assessment of the new pain? Like, does it act up in the

same way as PA sites, painwise--same times, or after similar exercise? Is it

getting better, staying the same, or getting worse? And, all those other little

observations we make about new pains. I do that; like, on the third day of the

pain, I go " uh-oh, I don't think thaaat's juuust a straain... " Sorry about the

bad news...maybe it'll be one of those real quick ones (I've had a few of

those--a week or two and poof! gone)

D.]

[Guest guest]

> [Editor's Note: Cyndi, I'm sorry to report that involvement in that area is

>

> > not really that rare. It is listed as one of the hallmark involvement

> areas

> > in PA in a number of reference works I've reviewed over the years;

> and--darn

> > it--I can attest to it from personal experience as well.

> > D.]

> >

>

> Well...not what I wanted to hear, , but I DO appreciate the info!

> ~Cyndi

>

> Editor's Note: Cyndi, would I be right in guessing, that when a new

> area/joint/location is " heard from, " you go through a little period of

analysis, or a

> kind of checklist assessment of the new pain? Like, does it act up in the

> same way as PA sites, painwise--same times, or after similar exercise? Is it

> getting better, staying the same, or getting worse? And, all those other

little

> observations we make about new pains. I do that; like, on the third day of

> the pain, I go " uh-oh, I don't think thaaat's juuust a straain... " Sorry about

> the bad news...maybe it'll be one of those real quick ones (I've had a few

> of those--a week or two and poof! gone)

> D.]

>

Yes, I've gone over and over in my head trying to think if I did something

that could have caused the pain...like pulling a muscle or something. I've

examined it thoroughly by pressing on it, moving in certain ways to see what

makes

it hurt worse, etc. and I've come to the conclusion that, unfortunately, you

are correct about it being PA...it seems to hurt in the same way as the other

pains. It's so weird how pains can come on all of a sudden...every one of my

pain areas were not there one minute and then the next minute they were and then

never went away...so strange. I'm just holding out hope that, like you said,

MAYBE this one will go away soon! A new pain was the last thing I needed right

now cause I'm in the middle of a terrible flare!! I hope things are better on

your end! Thank God, I see my new Rheumy on the 21st! SInce leaving my last

one, over a month ago, I haven't been on any meds except an NSAID...Mobic...and

worthless Ultram because I had to stop taking the Plaquenil due to a severe

rash from it. I'm figuring this new doc will probably put me on Mtx, which I'm

very excited about trying right now since I'm in so much pain and getting

worse. The fear of the side effects, at this point, is no longer an issue for

me!!! I'll give an update after my appt. Thanks for being there for me through

this, . It's such a wonderful thing to know all of you are out there and

that you understand how I feel. Best wishes to you all for a less pain week,

Cyndi

[Guest guest]

At 11:09 AM 11/12/03, you wrote:

>Hello everyone...Last night I started hurting in the right collar bone area

>and it is still here today...it hurts badly everytime I move. I've never

>heard

>of PA affecting this area before so I'm wondering if any of you out there

>have

>experienced this pain too. Thanks, Cyndi

>

>

>[Editor's Note: Cyndi, I'm sorry to report that involvement in that area

>is not really that rare. It is listed as one of the hallmark involvement

>areas in PA in a number of reference works I've reviewed over the years;

>and--darn it--I can attest to it from personal experience as well.

> D.]

Yes, I've read that many times too; and my physiotherapist asked me about

that area on my first visit with her, knowing I had PA.

[Guest guest]

> In a message dated 11/12/03 11:23:19 PM Central Standard Time,

> cynjan@... writes: Hello everyone...Last night I started

> hurting in the right collar bone area and it is still here

> today...it hurts badly everytime I move. I've never heard of

> PA affecting this area before so I'm wondering if any of you out

> there have experienced this pain too. Thanks, Cyndi

>

>

> [Editor's Note: Cyndi, I'm sorry to report that involvement in

> that area is not really that rare. It is listed as one of the

> hallmark involvement areas in PA in a number of reference works

> I've reviewed over the years; and--darn it--I can attest to it

> from personal experience as well. D.]

Ya Cyndi Ive got a nag there too. The last time I had shoulder troubles it

was more around to the back and situated directly over the ball of the

shoulder. Now it is on top hidden beneath the muscle that goes from neck to

shoulder.

Here's hoping that this too shall quickly pass. Orin

[Ed. Note: I had the same sort of pain kind of underneath my shoulder blades. It

felt more like muscle soreness than inflammation, and it took several months to

finally go away in spite of Humira, Arava, Naproxen, etc. Ron]

[Guest guest]

Greetings Charley,

As you did not mention the area of the fusion surgery, I will assume from the

description of your wife's difficulties, it to be the Lumbar or Lumbar/Sacral

regions.

The nerves in these regions are usually surrounded by what can basically be

described as fatty layers that are normally thick enough to offer (in most

cases) much protection from impingements of one sort or another.

Canal Stenosis, caused either by chronic degenerative conditions or an acute

episode (which in this case would be your wife's fracture and the subsequent

installation of the rod) will affect nerves and nerve roots.

I am guessing that the altered architecture resulting from the surgery has

changed the conditions of the nerve(s) affected.

I have not had surgery but my own condition is such that spine de-stabilization

occurs intermittantly where nerve impingement that normally affects the left leg

causes pain and numbness in the right as well or sometimes to the total

exclusion of the pain in the left leg.

I hope this information is somewhat useful...and the best of luck.

>

> My wife underwent spinal fusion surgery in early July and then a second

surgery two weeks later to repair the fractured vertebrae caused by one of the

screws,resulting in a rod being installed.

>

> The question I have regards pain.

>

> Before the first surgery, all of her pain was in the left leg,to the point

that she no longer slept. After the surgery, that leg was good as new. However,

she now--6 weeks after the surgery--has nothing but numbness or pins and needles

in her formerly good right leg. So far, the only improvement has been that

feeling in her right foot has come back.Anything about regaining feeling and

use? The doctor says he is puzzled.

>

> Has anybody else experienced something similar--one leg for the other?

> Any advice?

>

> Thanks,

> Charley

>

[Guest guest]

I beg to differ that hardware like rods and screws could not be causing

impingement problems. If they are improperly installed they can do just that.

In my spine surgery, my doctor put in the wrong sized hardware and not severely

damaged my nerves, dural lining, and spinal cord.

Are you a doctor?

> > >

> > > My wife underwent spinal fusion surgery in early July and then a second

surgery two weeks later to repair the fractured vertebrae caused by one of the

screws,resulting in a rod being installed.

> > >

> > > The question I have regards pain.

> > >

> > > Before the first surgery, all of her pain was in the left leg,to the point

that she no longer slept. After the surgery, that leg was good as new. However,

she now--6 weeks after the surgery--has nothing but numbness or pins and needles

in her formerly good right leg. So far, the only improvement has been that

feeling in her right foot has come back.Anything about regaining feeling and

use? The doctor says he is puzzled.

> > >

> > > Has anybody else experienced something similar--one leg for the other?

> > > Any advice?

> > >

> > > Thanks,

> > > Charley

> > >

> >

>

[Guest guest]

No, but I have helped place countless rods and screws in the OR...they

aren't placed near nerves. They are on the very outside of the vertebrae...the

skin side. If you have a  surgeon who is less concerned with everything being

right and more about closing up so he can get out of there...then crazy things

can happen.

I have seen docs who put in screws, did the final xray, noticed they were

off...here's how you know who's a GOOD DOC...no matter how long it takes, they

don't leave until it's right. THIS is why I say ask a OR spine nurse who's good,

because no amount of referrals will be based on such things. OR docs work mostly

alone...other surgeons don't see each others' work...so even thay may not be a

reliable source of referral.

Anyway...some (many) docs close up when the screws are off and say " good enough "

because they have to be somewhere or have a lot of cases to do and want to

finish quickly.

A fractured vertebrae can cause a lot of pain...usually not leg/nerve pain...but

I assume it's possible...it's not from the hardware though. I have a deep and

thorough understanding of what happens in a fusion and how it's done. I worked

up until last year in a Boston hospital with some of the countries finest spine

surgeons (Harvard docs)...as a spine surgical nurse.

--- Babbitt

________________________________

From: stillnessdwells <stillnessdwells@...>

spinal problems

Sent: Thursday, September 10, 2009 8:25:03 PM

Subject: Re: new pain

 

I beg to differ that hardware like rods and screws could not be causing

impingement problems. If they are improperly installed they can do just that. In

my spine surgery, my doctor put in the wrong sized hardware and not severely

damaged my nerves, dural lining, and spinal cord.

Are you a doctor?

> > >

> > > My wife underwent spinal fusion surgery in early July and then a second

surgery two weeks later to repair the fractured vertebrae caused by one of the

screws,resulting in a rod being installed.

> > >

> > > The question I have regards pain.

> > >

> > > Before the first surgery, all of her pain was in the left leg,to the point

that she no longer slept. After the surgery, that leg was good as new. However,

she now--6 weeks after the surgery--has nothing but numbness or pins and needles

in her formerly good right leg. So far, the only improvement has been that

feeling in her right foot has come back.Anything about regaining feeling and

use? The doctor says he is puzzled.

> > >

> > > Has anybody else experienced something similar--one leg for the other?

> > > Any advice?

> > >

> > > Thanks,

> > > Charley

> > >

> >

>

[Guest guest]

,

I live in Boston, and may need a surgeon at some point (trying to delay it).

Could you please tell me who you'd recommend?

Thanks,

________________________________

From: Babbitt <tpowell1977@...>

spinal problems

Sent: Thursday, September 10, 2009 9:12:51 PM

Subject: Re: Re: new pain

No, but I have helped place countless rods and screws in the OR...they aren't

placed near nerves. They are on the very outside of the vertebrae... the skin

side. If you have a surgeon who is less concerned with everything being right

and more about closing up so he can get out of there...then crazy things can

happen.

I have seen docs who put in screws, did the final xray, noticed they were

off...here's how you know who's a GOOD DOC...no matter how long it takes, they

don't leave until it's right. THIS is why I say ask a OR spine nurse who's good,

because no amount of referrals will be based on such things. OR docs work mostly

alone...other surgeons don't see each others' work...so even thay may not be a

reliable source of referral.

Anyway...some (many) docs close up when the screws are off and say " good enough "

because they have to be somewhere or have a lot of cases to do and want to

finish quickly.

A fractured vertebrae can cause a lot of pain...usually not leg/nerve pain...but

I assume it's possible...it' s not from the hardware though. I have a deep and

thorough understanding of what happens in a fusion and how it's done. I worked

up until last year in a Boston hospital with some of the countries finest spine

surgeons (Harvard docs)...as a spine surgical nurse.

--- Babbitt

____________ _________ _________ __

From: stillnessdwells <stillnessdwells>

spinedisorderssuppo rtgroup@gro ups.com

Sent: Thursday, September 10, 2009 8:25:03 PM

Subject: Re: new pain

I beg to differ that hardware like rods and screws could not be causing

impingement problems. If they are improperly installed they can do just that. In

my spine surgery, my doctor put in the wrong sized hardware and not severely

damaged my nerves, dural lining, and spinal cord.

Are you a doctor?

> > >

> > > My wife underwent spinal fusion surgery in early July and then a second

surgery two weeks later to repair the fractured vertebrae caused by one of the

screws,resulting in a rod being installed.

> > >

> > > The question I have regards pain.

> > >

> > > Before the first surgery, all of her pain was in the left leg,to the point

that she no longer slept. After the surgery, that leg was good as new. However,

she now--6 weeks after the surgery--has nothing but numbness or pins and needles

in her formerly good right leg. So far, the only improvement has been that

feeling in her right foot has come back.Anything about regaining feeling and

use? The doctor says he is puzzled.

> > >

> > > Has anybody else experienced something similar--one leg for the other?

> > > Any advice?

> > >

> > > Thanks,

> > > Charley

> > >

> >

>

[Guest guest]

,

I have it in my left leg, mostly at night, and I'm two years post revision. A

vascular surgeon told me to dring tonic water before bed because it contains

quinine. I do and it really helps. Try it!

Donna

>

> Has anyone had a nerve-like leg pain start up 2-3yrs post revision? The way I

describe it, my husband thinks it sounds like sciatic nerve pain. It goes down

the side and mostly back of my leg, mostly on the upper leg down to right behind

my knee. It sort of throbs and stabs, never really easing up. Sometimes if

somebody stretches me it will give a few minutes of relief, but it doesn't last

long. I haven't done anything new or strange lately that would have contributed

to this, or at least not that I can think of! Taking narcotic pain meds (i.e.

norco) doesn't help much, because they now give me horrible insomnia.

>

> Has anyone had this type of pain develop so far after revision? I'll be 3yrs

post-op this July. I sit about 95% of my waking hours, and my butt has been

killing me lately too.

>

>

>